Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

[A.B.]

By the way, consider donating rather than experimenting with drugs or supplements that mess with mTOR.

 

[eljefe19]

@Diwi9 I bought a gram of Ketamine off the dark net markets over a month ago and it still hasn't shown up. I was intrigued to try it as it's a strong activator of mTOR, and it's main metabolite Hydroxynorketamine induces BDNF significantly.

 

[eljefe19]

By the way, consider donating rather than experimenting with drugs or supplements that mess with mTOR.

Why not both?

 

[Diwi9]

@Diwi9 I bought a gram of Ketamine off the dark net markets over a month ago and it still hasn't shown up. I was intrigued to try it as it's a strong activator of mTOR, and it's main metabolite Hydroxynorketamine induces BDNF significantly.

I don't think ketamine was one of Dr. Goldstein's cures, just that he found it effective for reducing symptoms and allowing people to function. Ketamine is not a drug I would take without supervision, but some are more desperate. I don't judge anyone for trying to take of themselves and I wish none of us had to be guinea pigs.

 

[Jenny TipsforME]

Hmm perplexed by the list of mTor inhibitors. Includes supplements good in other ways

Natural Inhibitors of mTOR

• 
  
• NAC (R) (Clinical Trial: “profoundly reduced mTOR activity” in T cells), recently found to help MEcfs (though apparently the researcher was suspicious of extent of benefit!).
• 
  
• Cod liver/ Omega-3 (R) (C1/C2), meant to be great for lots of reasons. Including for me Vitamin A (I've got that SNP where you don't absorb from veg or other supplements)
• Extra Virgin Olive Oil (R)
• 
  
• Curcumin (R, R2) (C1/C2) …. Pain relief eg Younger research

• Astragalus (R), I found I had less fatigue on this

I wonder if we don't need to back off from all of this? Maybe we just need to avoid a day of 5+ of them? I've no idea, mTor is something I also know nothing about.

 

[eljefe19]

@Diwi9 I have always been a bit of a psychonaut, as in I will take drugs without supervision just for recreation not to mention trying to treat my ME/CFS. I've tried most things but Ketamine has always escaped me. I didn't think it was going to cure me either, but some extra functioning would be great.

 

[eljefe19]

Hmm perplexed by the list of mTor inhibitors. Includes supplements good in other ways



I wonder if we don't need to back off from all of this? Maybe we just need to avoid a day of 5+ of them? I've no idea, mTor is something I also know nothing about.

Yeah I'm wondering about NAC in particular. The others might have immunomodulatory effects that are helping? I'm no expert either.

 

[greeneagledown]

Did I hear correctly that they've already tried "every FDA-approved drug" ?

What he said was that they've tested every FDA-approved drug in yeast. He wasn't saying they've tested every FDA-approved drug in the blood of ME/CFS patients. He was just trying to illustrate that testing every drug can be done relatively quickly.

 

[eljefe19]

What he said was that they've tested every FDA-approved drug in yeast. He wasn't saying they've tested every FDA-approved drug in the blood of ME/CFS patients. He was just trying to illustrate that testing every drug can be done relatively quickly.

I'd love to make that order. I'd like one of everything please.

 

[aquariusgirl]

Anyone else get sick after taking Erythromycin?

 

[ash0787]

only thing I feel he could have touched on is whats the next move exactly, presumably there is more they can do to identify this 'protein', I guess this is ongoing but I wonder what sort of timeframe they are looking at there, and we keep hearing about the technique to test large numbers of drugs but when will that process actually begin ? are they still hiring new staff to do it, collecting equipment or constructing a lab ?

 

[hixxy]

What he said was that they've tested every FDA-approved drug in yeast. He wasn't saying they've tested every FDA-approved drug in the blood of ME/CFS patients. He was just trying to illustrate that testing every drug can be done relatively quickly.

I wonder how this works for drugs that need to be metabolised into an active form via the liver or through some other means?

 

[hixxy]

I already had health problems but ME started after penicillin injections. Conversely my only effective treatments in 12 years of this illness has also been antibiotics but the effect was always only temporary.

I'm pretty sure my pre-existing health issues somehow underly my developing ME as in many ways ME is just a massive amplification of those symptoms.

Is there a transcript of the video anywhere?

 

[Wolfiness]

What he said was that they've tested every FDA-approved drug in yeast. He wasn't saying they've tested every FDA-approved drug in the blood of ME/CFS patients. He was just trying to illustrate that testing every drug can be done relatively quickly.

Ahh, yeah. The auto captions say every FDA-approved drug "in use".

 

[aquariusgirl]

This seems a long way from my understanding of what is wrong w/me. Impaired sulfation& methylation. Lots of toxins stored up .heavy metaLS & o x o l a t e s.

I can see a drug stopping whatever is awry but you would still need to work on your toxic burden n.

Anyone else feel like the autism research is a better fit?

 

[aquariusgirl]

Also anyone know what mTor mutation he is talking about?

 

[Sushi]

This seems a long way from my understanding of what is wrong w/me. Impaired sulfation& methylation. Lots of toxins stored up .heavy metaLS & o x o l a t e s....Anyone else feel like the autism research is a better fit?

I think that would depend on your symptom profile as I believe his work is trying to unravel the classic "portrait" of an ME/CFS patient as defined by the Canadian and International criteria.

 

[PatJ]

I'd like to see a transcript as well. I can't listen to the audio due to hyperacusis. I'm grateful to everyone involved in producing the video and to Dr. Davis and his family for being so involved with the patient community.

 

[Janet Dafoe]

Ohh that first question was mine!! Oh the pride!! Ashley read it out word for word which is another example of the OMF treating us with dignity, after decades of people kindly treating me as delusional despite their being unable to understand basic questions. Thank you

That was me reading! And every question was read word for word as submitted except one, but the only change in that one was changing "Dr Davis" to "you" and the pronouns!

 

[lansbergen]

I'd like to see a transcript as well. I can't listen to the audio due to hyperacusis.

Can you not switch of the sound and use the undertiteks?